How Do You Know If U R Hyper Vs Hypo Pots

[sonyasmith12]

I was only told I had autonomic neuropathy & POTS.

[firewatcher]

Hyper/Hypo POTS are not universally accepted "groups." Usually, if you have upright hypertension and increased "sympathetic activity," like tremors, flushing or sweating, we tend to classify ourselves as Hyper. Some of us have measurably high levels of norepinephrine or catecholamines while upright. My doc at Vanderbilt labeled me based on my ANS test responses.

[forevertired]

My doctor said some signs of hyperPOTs are hypertension, tremoulessness, high norephrenine levels and excessive sweating. I have high norephrenine levels, tremors, and some upright hypertension, but my doctor said that because I don't excessively sweat (based on my autonomic testing) I am not hyperPOTS.

[ramakentesh]

Its pretty much a meaningless delineation that every research group has different opinions on. Some would say that autonomic neuropathy would indicate 'neuropathic POTS' which is hypo, but many neuropathic POTS patients have denervation hypersensitivity and feel and react very HYPER.

Most doctors would not agree that excessive sweating is the hallmark of hyper POTS. And the lines are blurred because many POTSies with autoimmune basis - such as AAG have VERY hyper presentations - increased BP on standing etc.

[ramakentesh]

Nearly all here would either catagorise themselves as hyper here or say that their doctor told them they were, but sympathetic excess is the hallmark of all forms of POTS.

[issie]

Yeah, I disagree with the sweating thing. I barely do, but have high NE levels and high bp's. Mayo classifies me as HyperPOTS. Of course, like Rama says the severe surges seem to happen to most all of us. But, when the NE levels go up - it seems to be REALLY intensified. If I take something to keep my NE levels down - I do much better.

Issie

[Clairefmartin]

Issie - you

Yeah, I disagree with the sweating thing. I barely do, but have high NE levels and high bp's. Mayo classifies me as HyperPOTS. Of course, like Rama says the severe surges seem to happen to most all of us. But, when the NE levels go up - it seems to be REALLY intensified. If I take something to keep my NE levels down - I do much better.

Issie

You may have mentioned this already Issie - but my brain is mush asfter a day in the ER, but what do you take to keep NE down? I'm trying to compat surges without upping my Klonopin. Thanks!

[issie]

Why were you in the ER? What happened?

Issie

[kayjay]

Mayo determines HYPER pots based on plasma NE levels. They have you lie down quietly for some time -check your levels... have you walk around for a few ( maybe 10min.) and then check again. Sweating can be effected by many factors including medication. beta bockers and SSRI to name two.

I tend to go with what mayo says because they developed most of the diagnostic tests that are used today.

If you have been misdiagnosed for Pheochomacytoma though 24 hour urine i would think it likely that you are Hyper POTS. 9 years ago Johns Hopkins was sure that I had this tumor ( I don't) but my urine catecholomines were very high.

[ramakentesh]

Mayo recently released a paper suggesting that hyper POTS is a compensatory mechanism for the same autoimmune neuropathy or gangliopathy present in other POTS patients.

[issie]

Rama,

Can you post that paper?

Issie

[POTLUCK]

I am interested in whether I have Hyperadrenergic POTS as Dr. Stewart in "Primer on the Autonomic Nervous System" edited by Italo Biaggioni, David W. Robertson, Geoffrey Burnstock, Phillip A. Low, Julian F.R. Paton states that "Low flow" POTS is similar to the "Hyperadrenergic" POTS originally proposed by Streeten. His research indicates that "low flow" POTS has reduced nitric oxide and that "regular flow" and "high flow" POTS have increased nitric oxide. Thus, if I have Low Flow POTS then treatments that increase nitric oxide such as Losartan ( via blocking Angiotensin 2 type 1 receptors ) and Vitamin C, among many other possibilities might help me. If I have one of the other types of POTS they might make me worse. Now Dr. Stewart himself writes that " these categories comprise fuzzy sets " however, if I wait till they figure it out I will not be well for a long time and I am sure many people on this site also see it as taking a best guess with their doctor.

Using this same reference I would note that Low Flow patients frequently have increased Angiotensin 2, have a higher HR, including resting than the other two types. ( one of his studies showed 85-90 average supine ), "generalized pallor, cool skin, and other findings suggesting circulatory insufficiency" "There is a marked female gender preference" ( I am male but that is not an exclusion. ) " 'There is also an inverse relationship with body mass index" " These patients often have increased upright concentrations of NE"

In http://www.stars-us.org/files/file/Clinical%20papers/110912-Hyper-POTS%20Proof%20copy.pdf Dr. Blair Grubbs 2011 article refering to 29 Hyperadrenergic patients he notes "

Patients were diagnosed as having the hyperadrenergic form based on an increase in their systolic blood pressure of >10mmHg during the HUTT (2) with concomitant tachycardia or their serum catecholamine levels (serum norepinephnrine level

600 pg/mL) upon standing.

My cardio said my blood pressure was increased 10 on tilt but it really stays about the same on average and bounces alot. I would not say I have general Pallor but definately have cold hands and feet and Raynoud's syndrome. I have a BMI of 23, and Type 2 diabetes which decreases NO. I have a high lying HR ( 85-105 ) and standing bounces to 156 and as low as lying but always goes over 130 off meds. High dose ( 140mg ) propranolol does not completely lower HR. I am waiting on Free Catecholamines sitting and standing, Angiotensin 2 Renin, and Aldosterone. ( They were unfortunately done back on high dose B-blocker. ) I think I have low flow, hyperadrenergic, POTS but am not certain by any means.

[issie]

Like you said, Potluck - it can be a guessing game. We do allot of experiementing on ourselves. Sometimes, the experiments are a complete failure and other times we get some benefits - but, not complete resolutions. That's why we keep on trying to "Figure" this out. I think, allot of the time, we may need something one day and not the next. At least, that's the conclusions I'm coming to about myself.

However, your reasonings make sense.

[L4UR3N]

Mayo recently released a paper suggesting that hyper POTS is a compensatory mechanism for the same autoimmune neuropathy or gangliopathy present in other POTS patients.

Yes please post!

[icesktr189]

My bp almost never goes higher than 110/70 but I have excessive adrenaline (did testing) and tremors, ect. I am always hypotensive but with hyper symptoms.

[ramakentesh]

http://www.ncbi.nlm.nih.gov/pubmed/17352367

OBJECTIVE:

To evaluate the prevalence and pathogenetic mechanisms of postural orthostatic tachycardia syndrome (POTS).

PATIENTS AND METHODS:

We reviewed the medical records of patients with POTS seen at the Mayo Clinic in Rochester, Minn, from January 1, 1993, through December 31, 2003. All patients were required to have had a full autonomic reflex screen. The results of the following additional tests were evaluated: thermoregulatory sweat test, plasma catecholamine measurement, serum ganglionic (a3) acetylcholine receptor antibody detection, and 24-hour urinary sodium measurement.

RESULTS:

We identified 152 patients (86.8% female; mean +/- SD age, 30.2+/-10.3 years) with a mean duration of symptoms of 4.1 years. The mean orthostatic heart rate increment was 44 beats/min. Half the patients had sudomotor abnormalities (apparent on both the quantitative sudomotor axon reflex test and thermoregulatory sweat test), and 34.9% had significant adrenergic impairment, indicating that at least half of the patients had a neuropathic pattern of POTS. In 13.8% of patients, onset was subacute, and ganglionic acetylcholine receptor antibody was detected in 14.6%, suggesting an autoimmune origin in at least 1 in 7 patients. Hyperadrenergic status was documented in 29.0% of patients (standing plasma norepinephrine level 2600 pg/mL), and at least 28.9% were presumably hypovolemic (24-hour urinary sodium level <100 mEq/24h). The lack of correlation between urinary sodium and standing norepinephrine levels suggests that mechanisms other than hypovolemia accounted for the hyperadrenergic state.

CONCLUSION:

Our findings suggest a neuropathic basis for at least half the cases of POTS and that a substantial percentage of cases may be autoimmune. Hyperadrenergic and hypovolemic correlates are likely compensatory or exacerbating.

[ramakentesh]

There is a view that hyper POTS are the same as other POTS but with secondary autoantibodies effecting beta 2 adrenoreceptors.

[issie]

There is a view that hyper POTS are the same as other POTS but with secondary autoantibodies effecting beta 2 adrenoreceptors.

Okay thanks for the other post.

But, now can you post the one on this?

Issie

[kayjay]

CFmartin, Beta blockers are really the most helpful for most truely hyper pots people. The block adrenaline and other stress hormones. Requires somewhat different treatment. High blood pressure ( at rest ) was one of the first clues to doctors that something was wrong with me. I would not be prescribed many of the medications that hypo pots people can take.

With a surge, your adrenal hormones can be high regardless... Fight or Flight response. With my Hyper POTS, those hormones are elevated all of the time. That is why the standard testing compares plasma levels at rest with levels after a few min. of walking.

Also my in my experience klonopin acts more to relax you mentally- for me it does not effect my adrenaline levels but makes me feel more calm.

[POTLUCK]

ramakentesh,

ganglionic acetylcholine receptor antibody was detected in 14.6% ( Can these be tested locally-labcorp, Quest etc.? )

[ramakentesh]

Only mayo, but Dr Theiben published that as many as 25% of POTSIES test positive.

[POTLUCK]

Too bad, that sounds like it would be worth testing and can't be that hard.

[issie]

A lot of people have the blood draw and then they mail it to Mayo. There are people that you could talk to about having done that. You could do a search for that. I don't remember right off hand who they were.

Issie

[L4UR3N]

A lot of people have the blood draw and then they mail it to Mayo. There are people that you could talk to about having done that. You could do a search for that. I don't remember right off hand who they were.

Issie

Yep! I had that done. Mine came back negative... was kind of hoping for a positive result to pinpoint exactly whats going wrong. If you go to www.mayomedicallaboratories.com you can look up the test you want and print out the directions for storage and shipping to the lab. This will be helpful for your lab and they will be much more willing to do a send out there. Initially my lab told me that they dont send out to Mayo, but after I made it super easy for them, they were willing. Sometimes you just have to do a little leg work to get what you want .

[POTLUCK]

Thank you